Sunday, August 4, 2013

SBRT Complete

I've finished my course of SBRT, having 45 gys in 5 fractions of 9 gys each.

That makes sense to somebody, I'm sure.

The Space Bag has been unplugged, the air allowed back in and is ready for use by another patient.  I was given a certificate of completion and told I was a model patient, which only means that I am really, really good at lying down, not that I look beautiful.

I do have a certain glow about me now though.

What do non-model patients do, anyway?  How hard can it actually be for a cancer patient to lie in one position for 15 minutes? Isn't that kind of what most of us do all day anyway?  Do these non-modelers scratch themselves in the middle of a radiation beam, or keep forgetting where they are and try to sit up? Do they scream at the techs, spit at the machine as it revolves around them, or complain about the music playing?

Speaking of music, I had a special playlist just for this therapy, given to me by my friend Sue S, and big thanks to her.  I listened to it on the way over to mentally prepare, and I highly recommend it to those of you who will be doing your own version of radiation.  Be warned:  some of the songs are so "danceable" that if you listen to them during therapy, you won't be a model patient, like me.  You'll be twitching and toe-tapping and soon enough, break through your restraints to dance with the dosimetrist.  (Especially on #13, my fav)   I'd suggest that during actual rads, you listen to something boring, like vintage Elton John, so you can lie quietly and maybe even sleep.

Thank you Sue:

1. Radioactive (The Firm)

2. Gamma Ray (Beck)

3. Radiation (Gavin DeGraw)

4. We all Radiate (Average Superstar)

5. Love is a Radiation (The Black Seeds)

6. The Ballad of Marie Curie (Army of Lovers)

7. We Radiate (Goldfrapp)

8. Radioactivity (Kraftwerk)

9. Radiate (Puddle of Mud)

10. Electron Blue (REM)

11. Drunk on Radiation (Lady Sovereign)

12. Radiation Vibe (Fountains of Wayne)

13. Electron Romance (Strontium 90)

14. Radioactive (Kings of Leon)

It's pretty amazing, when you think about it, knowing that stuff of stars has passed through my body and has hopefully snapped the DNA of my tumor into pieces, never to recover.  And, how complicated it was - there was a Physicist there, a Dosimetrist, the Radiation Oncologist, Radiation Therapists, several technicians,  all watching me on camera and computer as I was radiated, dosage carefully planned in accordance with bodily motion.   I wish my younger son could have been there as he is going to be a scientist and is making noises about going into medicine as a surgeon.  I think being a radiation oncologist or radiation physicist would be right up his higher math alley and tap into his skill set.

Speaking of college bills, I hate to think how much this treatment cost.  And, I wonder why my insurance keeps approving new, expensive and uncommon therapies for an ex-school secretary who doesn't add much value to society.  (Shhhhhh.....)  I'm not complaining, and thank you insurance, when we chose you, we certainly chose right.

Now what?

In a week, I  have blood tests to check liver function.  In six weeks, I will have a CT scan to see if there is improvement.  It takes up to six months to get final results, and this treatment will confuse a PET machine for a time so there will be some limbo until everything settles down.

Kind of like what happened with the resection, only this time I know it.

Of course, I'm now living life without a binky or security blanket.  I'm off chemo as my body can't tolerate it anymore,  and won't know if this has worked for a while.  While I have every confidence that SBRT will be successful for this area of cancer, I can't ignore the fact that cancer could continue to grow, either in my liver or elsewhere  - now unchecked by chemo.  That is what metastatic breast cancer does.

How dependent we Stage IV BC metsters become on chemo!  It's a hate/love/hate relationship, but we all know that when we can't have chemo anymore, it's often time to say good-bye.

I am just going to live under the assumption that this treatment killed that tumor, no new cancer will form for a while, perjeta will help, and it bought me enough time to make it to my son's high school graduation (this school year), which has been my goal since I found out I had mets.  Hey, maybe I'll be greedy and start to hope for time beyond that too.

Depending on the study, it looks like median overall survival after SBRT ranges from 13-20 months, and has a local control range in the 90th percentile.  Since there are no signs of tumor growth anywhere else at my last PET, I am going to mentally put myself in the "median is not the message"  group and assume I'm on the upper end of that line drawn down the middle.   In my mind, that the tumor is dead, and when more come back, it won't be for at least 20 months, maybe longer.  Of course, I have to temper that hope with reality, as the resection failure was swift, and seriously disappointing for me; I don't want to go through that again.  I have an incurable disease, I can't go into denial about that.

Side effects have been minimal.  I've been tired, of course, and spend the day in my pajamas with a blanket around my shoulders, which is not unusual as I do that almost every day.  Right now,  I don't have any flickers of energy like I had been starting to get before this treatment, but I hope and suspect it will come back.  The paperwork they gave me says that the fatigue can last up to three months.   I've had some nausea which has been controllable with medication.  I have some pain in my stomach and mid-section, which is not new but which is slightly worse.   My biggest problem is food intake.  I've no desire to eat; my stomach hurts worse when food is in it, the thought of eating is unpleasant and nauseating, and I am still losing weight. This has been ongoing since before radiation so I can't blame it on SBRT, and I do hope that it is arrested as I begin to heal.  I lost some weight caring for my Dad before his death which was understandable as I moved much more than normal and had no time to eat,  but then lost some more after I got home which is inexplicable.   I imagine my doctor will put me on a drug for weight gain if I get down into the 80s (which is just a pound or two away) but I would prefer to just gain on my own.  It is hard when nothing sounds good. My husband will ask me "Do you want something to eat" but the answer is no, and it is too difficult trying to figure out what I can tolerate.

No, I don't drink Boost or Ensure, that stuff is disgusting.  If I had a Blizzard from Dairy Queen, I might eat one of them though.  Hint hint for whenever my husband reads this.  :)

I do force myself to eat a yogurt and a piece of fruit every day and some of whatever my husband cooks for dinner. (Yes, he has to do the cooking these days and has had to for a while.)

Finally, my last symptom:  I have started to get headaches, which isn't a listed side effect but I've always been prone to them.  They also started before SBRT but seem to have gotten worse since.  I'm hoping it was just the stress on my back and neck of the position I had to lie in during therapy; or perhaps a side effect of not eating or maybe just stress about my Dad.  I hope they go away.  Dealing with all of this over the years has been hard enough, adding headaches on top of it is just wrong.

Oddly enough, even my powerful drugs don't get rid of them; only Imitrex does.  I assume that means they are still migraines, although they don't hurt as much as my migraines of old did.

My best friend of 25 years came up to visit me.  It always warms my heart when somebody wants to see me when I'm not sick, it feels to me like they are not obligated then.  Unfortunately, I wasn't well enough to do anything with her so we just colored with my new alcohol markers.  (No wonder people don't visit!) She went with me to an SBRT appointment and naturally, charmed her way into the room to take a couple of photos.  They wouldn't let her take them of me strapped in because they have to pull up the gown to expose my breasticle area, so you miss the torture clamp.  But you can get an idea of what the place looks like.

The blue is the bag of beads that is shaped like my body-doesn't it look like me?.

I fit perfectly, and happily.  Behind me is the radiation machine that moves forward and whirls around me.  Look close and you can see a green laser on my face.

Why not smile?  I am, after all, a model.  Patient, I mean. See the grab bars behind my head my hands are on?  My frozen shoulder is getting better to be able to do that.  Just took 3 years.....

So, I'm only left with every three week herceptin and perjeta, and monthly zometa and doctors appointment as my treatment, sprinkled, of course, with scans, MUGAs and blood tests.

What will I do with all that free time?


  1. yes it is amazing the army of people that care for you in radiation - really smart people. I sure hope that you well exceed the median. Best of luck getting your energy back! And glad you liked #13 :)

  2. Ann, love your list of music. Appreciate your glowing report, too. They let me take in music to radiation, but I just took in CDs I had, I didn't make a specific playlist. Your friend's list is so creative. Hope this treatment gets you not just to the HS graduation, but well beyond. Start getting your strength back now that it's over. Hugs and prayers.
    Elizabeth J.

  3. A brilliant account as usual! So glad it is now over for you and you can try to get some strength back. It's amazing that they could do treatment like this - very clever people. Wouldn't it be good to think that your son may one day be in a similar field. I so hope that this will buy you all the time you need and hopefully more. (There's nothing wrong in being greedy - you deserve it). Hugs. X

  4. Thinking of you, and wishing you well. Thank you for the update. It is appreciated.

  5. You are so strong, you are an inspiration to me. I'm sure you have already thought of this but just in case you haven't? Have you tried smoking pot. It might help your appetite? Thinking of you always, thank you for the post!

  6. You Rock! Truly, you are the kind of person I'd be bff's with if we weren't cyber friends. My prayer for you is that you blow the stats away and enjoy lots of quality time with your loved ones in as much comfort as possible. Goodness knows you deserve it. xoxo

  7. Great to see you are writing again with your sense of humor yet tons of details. I think planning to live is a good idea. Somebody has to be in the 1 percent and it might as well be you. There really are miracles. It might as well be you! Bonnie

  8. Thank you for the update - continuing to send good healing thoughts your way.

  9. when i took care of my mom she would not drink ensure as she hated it but loved it when I put it in the blender with ice cream and strawberry syrup. maybe?? hugs

  10. Ann, have you had a marrow biopsy?

  11. Ann,

    The headaches may be caused because you are dehydrated. Try and drink more water. I am breast cancer survivor and I do hypnotherapy and an energy healing technique called LifeLine. I would be happy to do a free phone call with you to help restore your appetite. send me an email

  12. What will you do with all of your free time? I don't like ensure either and most of the protein drinks are full of soy which is questionable. I always found bananas in the blender with some yogurt, milk and maybe a couple of frozen berries tolerable. Hope you get some of that energy back soon!

  13. I am inspired by your humor, courage, and honesty. I came across your site while looking for informaiton about survival rates once it reaches the bones. It was just what I needed to read. Wishing you only the best. You made my day.

  14. Hi, Ann, it's the proofreader from Boston (immigrated from the UK in 2007) who made contact a few months ago. It must be difficult to keep track of all the people who contact you! I just replied to a post on Facebook about your lovely son doing his presentation.

    I always read your blog and your post about the fiduciary placement was very moving. I felt terrible for you, and tearful, but the writing was - as always - beautiful. I'm sure that you would indeed like to flutter away like a butterfly. Lovely analogy. And then, I read your next post and it was about your father passing away. I'm so sorry. xxx

    Thanks for linking the Gould column. It's a great comfort, actually, in terms of my mother's situation since she has pelvic and spine breast cancer mets (from the primary cancer in 1999) yet no mets in the organs yet, as far as we know. This lack of organ mets is despite the fact that the first metastatic back pain happened in 2008 but she had no treatment for years, as she was not actually diagnosed with mets till the very end of 2012. So hopefully she will be on Gould's right-skewed tail, you never know! Her mother also passed away of breast cancer. I want to thank you so much for your writing and photos of all the treatment, because although I am only 38 now, if I ever get it too, due to the family history, I will be furiously re-reading all your posts. They really do help.

    And now, hopefully all you have to do is rest and recover from this latest round of treatment. Look at that smile on your face in the treatment room! You are such a trooper! Oh - I also followed your visit to New York. Man, that place is hot in the warmer months!


    Linda A.


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